Becoming an adult with neuromuscular disease: Experiences of individuals affected by neuromuscular disease and their families

At a glance

Co-project leader : Prof. Dr. Romy Mahrer Imhof, Dr. Veronika Waldboth
Project team : Prof. Dr. Alison Metcalfe, Dr. Christine Patch
Project status : completed
Funding partner : Third party
Project partner : Stiftung Pflegewissenschaft Schweiz, Florence Nightingale Faculty of Nursing and Midwifery, King's College London
Contact person : Veronika Waldboth

Description

Background

This study explored experiences of young persons affected by neuromuscular disease and their families during transition into adulthood. Becoming an adult is considered to be a normal developmental stage within the human life cycle. However, a chronic childhood condition can disrupt that transition and may have a negative impact on the young persons' and their families' lives. Therefore, this study aimed to understand experiences of families suffering from neuromuscular disease during transition of the affected young person into adulthood and to identify major challenges and strategies by which individuals and families successfully adapt to new situations.

Method

The study design was a constructivist approach to Grounded Theory. Data were collected from single interviews with young people affected by neuromuscular disease and their families. Data collection took place in Switzerland. Interviews were recorded and transcribed verbally. Collected data were analysed using coding, memo writing and theoretical sampling aiming at data based theory development.

Findings

The analysis of 31 interviews from 12 families resulted in an interpretive theory constituted by four categories describing the transition experience of families as a life in a field of tension between development and degeneration. During the transition into adulthood affected youngpeople were becoming adults, while at the same time their health situation deteriorated. Families experienced challenges meeting these demands. They tried to take over more caring activities while at the same time put efforts in supporting the young persons independence.The families’ resources and strategies of coping and adaptation and the ways they related and communicated with each other, shaped their transition experience.

Further information

www.zhaw.ch/...

Publications

Waldboth, Veronika; Patch, Christine; Mahrer-Imhof, Romy; Metcalfe, Alison,

2021.

The family transition experience when living with childhood neuromuscular disease : a grounded theory study.

Journal of Advanced Nursing.

77(4), pp. 1921-1933.

Available from: https://doi.org/10.1111/jan.14754
Derungs, Seraina; Bürgi, Tabea; Waldboth, Veronika,

2021.

Amyotrophe Lateralsklerose : Bedürfnisse von erkrankten Menschen und deren Familien [poster].

In:

SBK Kongress Online, 12. Mai 2021.

Winterthur:

ZHAW Zürcher Hochschule für Angewandte Wissenschaften.

Available from: https://doi.org/10.21256/zhaw-22603
Waldboth, Veronika,

2019.

Aktuelles aus der Forschung zum Thema Familien und Transitionen.

In:

PING Night, Zürich, 26. September 2019.
Waldboth, Veronika; Reichart, Christine; Grädel Messerli, Barbara,

2019.

Psychoeducative and relationship-centered interventions for families living with neuromuscular diseases during the affected young person's transition into adulthood : a meta-synthesis [poster].

In:

14th International Family Nursing Congress, Washington D.C., USA, 13-16 August 2019.

ZHAW Zürcher Hochschule für Angewandte Wissenschaften.

Available from: https://doi.org/10.21256/zhaw-18232
Waldboth, Veronika; Patch, C.; Mahrer Imhof, Romy; Metcalfe, A.,

2018.

Families living with neuromuscular diseases : the impact on family life [paper].

In:

Joint Annual Meeting SSC/SSCS, Basel, 7. Juni 2018.
Waldboth, Veronika; Mahrer Imhof, Romy,

2018.

Junge Personen mit progressiven neuromuskulären Erkrankungen : das Erleben innerhalb der Familie.

Palliative CH.

2018(4), pp. 15-18.
Waldboth, Veronika; Patch, C.; Mahrer Imhof, Romy; Metcalfe, A.,

2018.

Living with a progressive neuromuscular disease : a grounded theory study of family experiences.

In:

Nationaler Palliative Care Kongress, Biel, 14.-15. November 2018.

palliative.ch.
Waldboth, Veronika; Patch, C.; Mahrer Imhof, Romy; Metcalfe, A.,

2017.

Living in a field of tension between development and degeneration : a grounded theory study of family transitions and neuromuscular disease.

In:

13th International Family Nursing Conference, Pamplona, Spain, 14-17 June 2017.

International Family Nursing Association.
Waldboth, Veronika,

2017.

Erwachsenwerden mit einer Muskelerkrankung : Ergebnisse.

Info - das Mitgliedermagazin der Schweizerischen Muskelgesellschaft.

17(1), pp. 12-14.
Waldboth, Veronika; Patch, C.; Mahrer Imhof, Romy; Metcalfe, A.,

2016.

Living a normal life in an extraordinary way : a systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition.

International Journal of Nursing Studies.

62(10), pp. 44-59.

Available from: https://doi.org/10.1016/j.ijnurstu.2016.07.007
Waldboth, Veronika,

2015.

Erwachsenwerden mit einer neuromuskulären Erkrankung.

Info - das Mitgliedermagazin der Schweizerischen Muskelgesellschaft.

15(3), pp. 12.
Waldboth, Veronika; Patch, C.; Mahrer Imhof, Romy; Metcalfe, A.,

2015.

Becoming an adult : experiences of individuals affected by chronic childhood disease and their families during transition into adulthood - a systematic literature review.

In:

12th International Family Nursing Conference, Odense, Denmark, 18-21 August 2015.

International Family Nursing Association (IFNA).

go back